Transcript A COMING OF AGE

Living well with long-term conditions:
What next for social care?
13 September 2011
Jim McCormick
Context (1)
• Living longer with long-term conditions (LTC)
• Living alone: almost half (46%) of households
with care needs contain only one adult
• Recognition of self-management and role of
unpaid carers runs way ahead of investment
• Preventative spending: taking demand out of
the system where possible
• Pressing need for more flexible/responsive
use of all care resources: “reach for the
volume control not the on-off switch”
Context (2)
• Elements of the Christie vision are already
shared:
- Rights/citizenship focus
- Personalisation through self-directed support
and self-management
- Prevention
- All in support of independence, empowerment,
resilience
• Embed these in practice to address current
and emerging needs
Emerging needs
• Children and young people with LTC: where
are they in this debate?
• Long-term emotional and psychological
support needs for people with LTC and their
carers
• The growing risk of loneliness as a long-term
condition and poor health/depression among
the over-80s
• Commissioning duties on long-stay NHS and
care homes?
Perception of own health by age group
(Scotland 2008)
Mental ill health by age and sex
(% scoring 4+ on GHQ12, England 2004-06)
Rights
• Rights to Independent Living (14)
• Human Rights and Dementia (PANEL)
• Human Rights in Healthcare and
Compassionate Care focus (NHS)
• A right to self-assessment in community care?
• But what about rights in the face of stark
rationing? R (McDonald) v LB Kensington and
Chelsea and the struggle faced by younger
people with LTC to access/afford basic home
care
Self-directed support
• To promote changes in culture, assumptions
and behaviour around how needs are defined,
support is sourced and how services engage
with citizens
• Individual Budgets and Direct Payments are
just one expression of SDS: what about frail,
vulnerable and isolated people?
• Community approaches to self-management,
e.g. for people with communication/sensory
impairments?
Prevention
• Public health: risks of high blood pressure,
cholesterol and obesity for some types of
stroke, diabetes and vascular dementia
• Boost protective factors: maintaining social
networks, access to “bits of help”, exercise
• Delaying high-cost care: later use of day-care,
hospital stay and residential care
• Secondary prevention: e.g. cutting the risk of
further CHD or stroke; re-ablement support
Re-ablement
• Homecare re-ablement: evidence from
Edinburgh (after 12 weeks) and 5 English
authorities (after 1 year) broadly positive
• But for whom: getting back on your feet,
regaining functional ability versus managing a
degenerative condition?
• Re-ablement elsewhere e.g. Extra Care
Housing, short-term use of care homes?
A system for Wellbeing (1)
• Apply these elements of a better vision for
social care consistently well.
• Include a more sophisticated approach to
health care addressing complex/multiple
conditions in the round.
• Recognise that ‘time and task’ is often
necessary but not sufficient.
• Combined, these can create a system for
wellbeing – living well with LTC.
A system for Wellbeing (2)
• Pathways to wellbeing – and the contribution
of social care - may differ for people with:
- Long-term, relatively stable impairments
- Long-term conditions with prospect of recovery
- Long-term, degenerative conditions
• Independent living and empowerment can be
regarded as rights through which many
achieve a wider purpose (e.g. community
involvement not just “keeping people in their
own homes”).
A system for Wellbeing (3)
• Care as relational not just transactional
- This Prime Minister and the last one
reached the same conclusion...
• Care as a verb not just a noun
• Care as an expression of values and ethics not
just a manual of regulations
Generic or specific?
• Good generic approaches like person-centred
planning apply to all long-term conditions
• Generic advocacy networks can engage with
LTC specialists to adapt their support
• But social care needs to adapt to some of the
common features of specific conditions: e.g.
- risk to personal safety (Alzheimers)
- unpredictable medication needs (Parkinsons)
- undiagnosed depression (Stroke)
Money for change (1)
• Evaluations look at overall costs/savings as
well as benefits in psychological wellbeing,
capability, satisfaction and feeling in control of
daily life.
• Clear savings (£) can be found in elements of a
programme. Total net savings are often small
but quality of life benefits significantly higher:
people stay well for longer.
• Costs and benefits need to be tracked for
longer.
Type of
support
Evaluation findings
Re-ablement Re-ablement led to a 60% decrease in cost of care services
used over 12 months compared with conventional home care
users. These lower costs were offset by the higher cost of the
re-ablement itself, so savings were marginal. Quality of life
measures were higher than in the control group.
Selfassessment
Self-assessment pilot for older people with low-level needs:
this approach was 70% cheaper than a care manager
assessment, while satisfaction levels and the cost of services
used were similar.
Individual
Budgets
IBs found to be most effective for psychological well-being and
social care outcomes for mental health service users, then for
younger people with physical disabilities and least so for older
people. Overall costs are only slightly lower than for the
comparison (non-IB) group, but feeling in control of daily life
was significantly higher.
Other Examples
• Dementia family care coordinator: intensive
community-based support (Finland) delayed
early admission to residential care but same
rate after two years as control group.
• ‘Safe at Home’ telecare (two English counties):
reduced stress on carers, helping 60% of
people with dementia to remain at home after
2 years versus 25% in control group.
Money for change (2)
• Beware tighter competition for less money
between: levels of need (low-moderate vs.
acute); condition types; and age groups:
“It’s going to get rough out there”
• Bridging finance for alternatives: make it
easier to get ‘step-up’ social care and medical
support in the community (e.g. hydration)
than to get a hospital bed.
• Broaden the lens to consider the full set of
resources (£ and people)
People for change
• People with LTC, unpaid carers and their wider
support networks (peers, befrienders)
• Key worker examples from different
conditions (e.g. specialist advisers,
coordinators and community nurses)
• Social care/NHS workforce and Personal
Assistants: ethics, values and technical skills
• Community stake in social care (e.g. Japanese
care currency)
Governance for change
• Too much in the box marked ‘localism’ (e.g.
portability of care packages?)
• Contrast in accountability and scrutiny
between NHS and local government: help and
hassle to improve quality of care?
• Change Fund: tight focus on local match with
national strategy, policy goals, what works and
changes achieved
• Inequalities or just variations (assessment,
support, charging): how much is too much?
Improving the improvement cycle
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Reflective practice on the frontline
To complement inspection and regulation
Getting to unheard voices
Breaching the ‘gratitude barrier’
Advocates and volunteer befrienders
Whistle-blowers
Using the complaints system pro-actively
Collaboration across LTC
• Related groups of LTC can collaborate: e.g.
communication impairment across conditions
is poorly understood by social care and falls
between neurology, geriatrics, psychiatry.
• Learning from each other, e.g. post-diagnosis
approaches to maintaining natural support
networks, key workers/brokers
• Making common cause on the right issue (e.g.
UK Caring Choices alliance)